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Author
Topic: A Message From tnboy (Read 4653 times)

Just wanted to say Hello to everyone and let you all know that the reason I have not been around for a while.

About 3 months ago we had a power outage in our area that destroyed the mother board to my computer. It had a power serge protector on it but for some reason it did not work this time. Unfortunately, I do not have the means to have it fixed or replaced. I feel lost without my computer since it was my only means of support for dealing with this illness. I guess we don't know how much we depend on something until we don't have it anymore.

I made many new friends here and I miss you all very much. I just happen to be where there is a computer today and am taking this opportunity to let you guys know what happened. Unfortunately, all my contact information was on my computer so that is why I have not been in touch with anyone.

For those who care to, please keep me in your thoughts and prayers in the days ahead. I had blood work done about 3 weeks ago and my report is not good. In June my t-cell count was 170 and VL 100,000. My t-cell count now is at 51 and VL 204,000. The biggest change I have ever had in my 5 years of being positive.

I have to go for now and have no ideal if and when I may get a chance to visit the site but I miss everyone very much and wish you all the very best with each and every day.

I know we haven't chatted before, but I did want to take a moment to say "take heart". While your latest stats may not sound that great, things can turn around in a jiffy...especially if you haven't been on a meds regimen yet. My CD4 counts were just as low- and my VL was something along the lines of "a gazillion infinity squared" when I started downing my first pills. Today? Undetectable and CD4's somewhere in the 350-400 range. Here's wishing you the best.

Twice in the same day! Who knew, but I take the opportunity when I can.

Thanks Mark and Tim for the replies.

To answer your questions: when I saw my doctor 3 weeks ago his words to me were " You know you are going to die don't you"? First time he has ever point blank said that to me. That was the same day he ordered my recent blood work. I have not actually seen him since the new numbers. I will see him next Tuesday on Halloween. I called and got my numbers from his nurse but I am sure he will give me the facts when I see Tuesday.

Guys, I started on meds about 5 years ago when I was first diagnosed and took them faithfully for 3 years and did improve. I stopped meds almost 2 years ago because, to be perfectly honest, I cannot afford them. The ASO workers that service my area have tried to get me assistance but I am not eligible for any. I draw too much for any assistance but cannot pay for meds and living expense's. Just like it is with all programs, some get too much assistance and some can't get any. I know there are others in my situation and I guess unless you are there it may be hard to understand. The other problem is that I am resistant to many of the meds and have few options. I was really hoping that the new one pill,once daily would be a possibility but my doc says I am resistant to it as well.

Whatever happens, happens. I try to just focus on one day at a time because that is all any of us have anyway.

Thanks Guys so much for your support.

Mike VaughnP.O. Box 152Halls, Tn 38040

If anyone should care to mail me the old fashioned way I would Love to hear from you..since I don't have a computer anymore and very limited access to one.

Sorry to hear about your computer. (though there are many times I wish mine would explode! He He He)

I'm concerned about your statement that you can't afford drugs and are not eligible for ADAP. (Your numbers are such that you need to be on HAART! Your doctor's comment doesn't apply if you can find a regimen that will work and can get access to it.)

Tennessee is a 300% of poverty level state, meaning unless your monthly income is > 300 of FPL then you should be able to use ADAP. (That would be about $2,500.00 per month or so.)

Maybe you got some bad information or something, or maybe your income is that substantial (but if I remember previously you said you live on a very small income--but with my brain fog I could have that screwed up )

Mike,There must absolutely be something that you can do in order to get your medicines. Please, please, do not give up! Oh my God, there must be a way...! Do not listen to your doctor and the negative things he's telling you right now. You should be taking Bactrim for sure, and have an idea to what medicines you still have some sensitivity left. Next, fight, fight and fight for your life! Even if you have to steal some medicines from some hospital in Tennessee...I am sending you a letter through snail mail.

The Partnership for Prescription Assistance (toll-free, 1-888-4PPANOW or www.pparx.org) is the only source that provides a single point of access to the more than 475 patient assistance programs, which include more than 180 programs offered by the pharmaceutical industry. The PPA educational effort is supported by America 's pharmaceutical research companies working with doctors, pharmacists, health care providers, patient advocacy organizations and community groups. More than 70 major national organizations, including the American Academy of Family Physicians, the National Urban League, United Way of America , Easter Seals and the National Alliance for Hispanic Health, are involved in the campaign. PPA now has more than 1,200 local and state partners located throughout America as well.

"Millions of patients are already receiving free or nearly free drugs from these programs, but it is clear that millions of other Americans from all over the country -- in cities and rural areas alike -- are not taking advantage of the help that is available to them," said national spokesman Montel Williams. "The PPA is a concerted and effective effort to reach those who still need help. And I'm going to do everything I can to get the word out. As a patient who must cope every day with the effects of multiple sclerosis, I understand only too well the importance of having access to the medicine you need."

It is good to hear from you just as Mark has said and the others. Please by all means DO what you can DO in order to get your meds which are needed at this point in your life. If you need to apply for Disability, go and do that and see at the same time if you qualify for Medicaid.

Hi Mike. I don't know you since I am new to the forums, but I copied your first post this morning to the Aids Support Group staff whom I hope will go forward with making access to poz.com, the forums, other hiv websites via computers in their two Cape offices a priority. The connection which you speak of so well is exactly my point in pushing them on this. Apparently there has been an attempt over the past year to set up a mentoring program, meaning finding experts to train, getting enough volunteers, setting the guidelines, etc. but having discovered this means of connecting, there is no logic behind delay.

As for you medication issues, if you are not able to sort out ADAP in TN, do know that there are underground networks which get drugs which are not used by patients to patients who need them. I had been prescribed much more Norvir than I needed and made that 'disappear' locally for anyone in need. Others on the forum may have websites with info. on this. It's a great use of resources and so different than the rules in mental health where I work: any unused medications have to be destroyed and the destruction of them recorded and witnessed. Win

Logged

Winthrop Smith has published three collections of poetry: Ghetto: From The First Five; The Weigh-In: Collected Poems; Skin Check: New York Poems. The last was published in December 2006. He has a work-in-progress underway titled Starting Positions.

Mike-I am sure that u will find a way to get the drugs that u need. Don't give up! I wud strongly suggest that u take ur meds. Now I say strongly suggest cuz I cannot b there to force them down myself. I can b a stickler like that and I firmly believe in near 100% adherrence in taking them myself. I hope that u get on meds soon.

hey all - i'm thinking of printing this and mailing it (via snail mail) as suggested, by friday afternoon

if anyone wants to add a comment, please do so

tnboy - i went to www.pparx.org and just for the heck of it i typed in lexiva and it is indeed one of the drugs that's available for those who qualify --i assume there are others available besides lexiva

Hallo Mike, i just couldn't believe what i have read for not being able to pay the medicines... i cant believe that, Tennessie is in the states!!! There must be a way to get help. Please do not give up. An ocean further away, i will pray for you tonight.

Sorry for not being able to respond in such a while but please Know it is not intentional!

First let me say my most heart-felt THANKS to Alex for sending me a copy of this thread viva postal service. I did receive it last Thursday and have been trying to get to a computer ever since.

Alex, I do not know how to put into words my appreciation for your concern and giving of your time to do this for me. I Love you for it and it means so much to know I have people that actually can relate to my needs.

I just now have seen the Pm's some of you have sent in the last days and I cannot can begin to put into words how much it all means to me. I Love and Thank you all so much for your support !!

I wish I could spend all day here expressing thoughts and gratitude but time does not permit so I will try to pull my thoughts together and share what I have learned since my last post.

I did see my HIV doctor again on October 31st. Since I still do not have transportation, I have to borrow a ride or have someone take me. I did ask a family member to take me and sit in on the visit in hopes my family could get a better understanding of what is going on.My doctor did share with her as he did me, the need to be on medication NOW because I was certainly headed for death. He could not put a time frame on it but it was certain.

On a bright note, he did say that as for now the virus does not seem to be attacking any organs BUT I am at such a high risk that any infection could change that overnight. Many of you have been there and know even better than I what he is talking about.

We explained the financial situation to him and he agrees and understands it is a problem. He wanted us to speak with the case worker there to see if she could come up with any assistance.I have spoken with her many times in the last year, as well as the nurses there, and they are very concerned and have apologized over and over but say that because I am on Medicare I am not eligible for any assistance.They hate it as much as I do but their hands are tied and there is nothing they can do.

My doctor is very knowledgeable about treating the virus but even his nurses say he does not understand how the assistance programs work.

That all being said, I have not given up. I have been calling everywhere I can think of and anywhere others tell me about. All the programs we see advertised on TV that offer drug assistance, I have called and ,again ,because I am on Medicare they say they cannot help me.

I spoke with Medicare just last week and the gentleman I spoke with was very understanding but had little advice to offer. He did give me numbers to another place to call, which I did. That lady was very understanding as well and told me she was going to send me an application anyway even tho I do not meet the guidelines, to send it in and explain my situation and maybe it would help. I have done that but know it will be a while before I will hear anything.

I know all this may sound strange to some of you but it is what I am being told and that is all I can go on. Some of it may be wrong information but until I can find a person that knows better it is all I can go on.

It is very difficult to share all the details in such a limited time but I hope I have made some sence in sharing what I know for now.

Everyone please know I miss you all and will update when I can. I know I am not the only one that deals with these situations so my heart goes out to everyone fighting this battle we all share.

I am sorry to hear that you lost your computer. I know what you mean. Also don't get discuraged about your numbers. Don't give up, just keep up the fight, remember we are always here for ya. Take care.... Huggs and Kisses, BradP.S. I am from Tennessee too.....Kingsport to be exact... Me and my partner Jerry live here and are very happy....if your close maybe we could get together sometime.

It is a very unfortunate situation that you are dealing with through Medicare. As it was mentioned you should apply for the "Extra Help" from them. Based on your income and your situation, there should be some sort of program available to assist you with your needs.

As Gerry has mentioned; Did your Doctor tell you which Drug Regimen you will be taking?

I am sending you my BEST wishes and prayers that you find a resolution for this matter.